In June this year (2017) I went from being a fit 45 year old male to having Brain cancer overnight.
i had a seizure that started in my left foot and went up the left side of my body. A CT scan later that day showed a tumor on the right side of my brain. Two days later I had a biopsy which showed I had a glioblastoma stage 4 and the neurosurgeon gave me the median survival rate of 14 months.My neurosurgeon wanted to operate but believed that I would come out partially paralyzed on my left side because of where the tumor was located.
I had the removal done two days after the biopsy and the surgery was very successful with the surgeon thinking he got he majority of it. I ended up with just slight weakness and a DVT below my knee on my left side but everything else was normal and with recovery quality of life was good even walking with a limp. Just over three weeks after surgery I started the 6 week course of radiotherapy and Chemotherapy (Temolozide), once this started I started getting focal seizures in my left shoulder or left hip they would last a few minutes then go away and sometimes start up again. Four weeks into radiotherapy my movement on my left side had become so bad I had to be wheeled in to gave my treatment done. I completed the 6 weeks of radiotherapy and Chemotherapy but I had started to lose the use of my left arm as well as I could hardly walk around. I was on 16 mg of Dex at this stage as well as tablets for the seizures and DVT. My 12 week MRI wasn’t due for another couple of weeks but I had and appointment with my General Physician who was dealing with the DVT. She wasn’t happy with my condition and ordered a MRI for the next day. The MRI showed that the tumor had already come back. We decided to go with having this de bulked even with the neurosurgeon saying that I will definitely be paralyzed on my left side. Surgery was a success again and to the surgeons amazement I did not come out paralyzed. Recovery from this surgery has been a lot slower but I have got my movement back to what it was after the first surgery so quality of life is good. My last MRI came back clear and have another mid December
I also had a neurologist come on board and he has balanced out my seizure drugs.
I have a group of four specialists who are all on the same page with my treatment
I am also at the stage of reducing my Dex which is down to 3mg a day
i have just finished my 3rd round of Chemo which is a double dose of Temolozide for 5 days then 23 days off, I get a bit of nausea but it’s not that bad.
I know what my fate is but I just look at the positives and will get the most out of what time I have left.
Sorry if I raved on but if anyone has any questions about my journey please don’t hesitate to ask
Thanks for your message thread here.... My mom has same as you and I've just come back from the US (where she lives) I've been over there for 2 months spending time with her.
She's still feeling good; her surgery was on May 27th and she's just finished her last radiation treatment yesterday. Of course I'm just joining to feel part of something...and learn more. She hasn't had any seizures yet, and stops taking the daily Chemo pill this week and will transition to the strong one in a few weeks time which you take for only 5 days out of a month.
I hope you continue feeling okay Felix, thanks for your messages,
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